My MS Symptoms Top 10 Countdown - #4 Cognitive Challenges

My brain has always been a huge part of my identity, as I suppose is the case for most people. My intellect and my wit have everything to do with how I see myself and I'm sure are a big part of how others see me. Because of this, I've always been particularly terrified of the potential cognitive consequences of MS. And I've been particularly devastated by the realities.

Cognitive issues I've experienced:

• Brain Fog: Brain fog is a fuzziness, a slowdown of thinking speed, and having trouble concentrating. Brain fog is a perfectly apt descriptor. It's like a heavy fog that limits what you can see.  A favorite fictional character with MS calls it brain mud instead of brain fog, which is also accurate. It's messy and hard to walk through. Sometimes I have trouble understanding simple directions. I often have trouble understanding what someone is saying or what something means. Much of my thinking process is just significantly slower. [Some of my brain fog is likely exacerbated by drugs I take for nerve pain. More on that in a later post in this series.]
• Memory Issues: Some who know me might argue that my memory has never been stellar, at least in some areas. It has definitely been made MUCH worse with MS, though. I've had many big lesions in the areas of the brain most associated with memory. Memory issues are a combination of difficulties - trouble acquiring new info, trouble retaining info, and trouble retrieving the info.
• Word Retrieval: As a lover of words and as a writer, this one is especially awful. Sometimes it is also hilarious. We all experience the inability to think of a word from time to time, but the rate of this happening for me has skyrocketed. Sometimes it's for more obscure words, but it's often for incredibly common words. I often try to act out the word to have someone help me find the word, but this is often hilariously unsuccessful. Or I'll just describe the word, like calling a match a fire stick. Sometimes I use the wrong word, and I'm often not even aware of it unless someone gives me a weird look or asks me about it. This really worries me, though - how often have I used a bizarre, completely incorrect word and whoever I'm talking to doesn't say anything or give it away with a look? Especially in professional contexts, this thought horrifies me. A favorite example my family and I still laugh about is when I replaced the word slippers with muffins. As in, "have you seen my muffins? they were just right there on the floor!" There are many examples like this. Or sometimes I make up a word, without even realizing that the word I'm saying is not a real word.
• Decision Fatigue: Everyone who knows me will tell you that I've never been fond of making decisions. I will avoid making decisions as much as possible, especially on things like where or what to eat. That said, making decisions has gotten much harder thanks to MS. Decision fatigue is something that happens to everyone, but for many of us with MS, it is compounded. This is related to MS fatigue in general. It is significantly worse later in the day, or on days where the fatigue is just at its worst. Minor decisions are difficult, but making huge, highly consquential decisions - like what MS drug to switch to - can be completely overwhelming. Decision making is the only area where I've used the "MS card" with friends and family, but so far it hasn't really worked. Dear loved ones, when I struggle to make decisions or when I ask you to please just make the decision, understand that my difficulty with decision making is a real symptom of my MS and that making decisions (even over simple things like where or what to eat) can really stress me out. It's not that I just don't want to make the decision, it's that it is actually nearly impossible to do so. It feels like my brain is paralyzed, like I'm stuck and don't know how to move.

My MS-related cognitive challenges have affected my life in a few ways. It has really challenged how I think of myself, and how much I place my intellect at the core of my identity. I've had to wrestle with the question of how I can or should see myself when that is threatened. It makes me feel bad about myself. It was also a big part of why I left a job that I mostly loved. Teaching applied music lessons (one-on-one) as well as teaching classes that involved lecturing to large groups was something I loved, but it was something that was getting harder to do, for a lot of reasons. I often struggled to find the right words and would sometimes even forget what I was saying in the middle of a sentence. This was embarrassing and upsetting for me, and it was probably sometimes frustrating for my students. I still teach university classes online, which is a medium that is more forgiving since it gives me more time to find my words and make sure I'm making sense. 

In many ways, my cognitive challenges are only mild. Some days are worse than others. A big part of why the deficits I have suffered have been so upsetting is the fear they spark about what could be. I'm utterly terrified of losing more of what makes me me. It's already bad enough.

This Week in My Life: Week 39 of 2016

It's been a rather awful week. The promised symptom post is almost done, so it should definitely go live before next week's TWIML post. I'm too crabby right now to write anything, so here are some pretty pictures from the week.

The view from here:

This Week in My Life: Week 38 of 2016

I'm working on my next symptom series post. It should be coming at you in a few days! There will also be a related post that I'm working on for this topic that I'm very excited about, a collaboration with my sistar.

This week in MS news:
I had an MRI this week and got mostly good news. The MRI 6 months ago was devastating with extensive disease progression, tons of new lesions, and tons of enhancing lesions. Since then, I stopped the drugs that were doing nada and got back on my beloved and trustworthy Tysabri. I knew I was doing better, but the MRI confirmed this. The overall report was that pretty much all lesions were much smaller and there were no new lesions. There is still one enhancing area, which sucks, but overall I'm happy.

I kind of fell down the stairs today, or 6-7 steps anyway. I don't know what happened exactly. I think I just kind of slipped, but maybe it was partially my wonky balance acting up. I kind of caught myself so I didn't fall allllll the way down.I have a bruised bum and a bruised ego, but I'm not otherwise hurt. It has me thinking about the future and how being in a home without stairs might be better for me, sadly.

The view from here:

don't these clouds kinda look like waves?

nighttime moon + clouds

freshly picked raspberries from a friend! the best.

Fall is my fave but around here it's over in 2 seconds. :-(
(there are already some trees in town that have fully turned color and shed ALL of their leaves.)

mushroom architecture on a tree stump, a combo of gross + pretty

there was a most spectacular sunset this week. 

This Week in My Life: Week 37 of 2016

Another week where I took very few pictures. I did write another symptom post, though, about itching. Only 4 posts to go in this 10 top MS symptoms countdown, and a few of them are doozies.

The view from here:

Finally shipped off these 300 origami elephants for the world record attempt.
I hope we make it!

Just snapchatting with Ken, as one does.

Big week, folks. I finally purchased a squatty potty.
These results are not typical, but so far I do think it's a good thing.

I finally opened a separate Instagram for my origami pics: @elegamipapercrafts.
My other account @nelsonkl23 will still be mostly nature and food and such.

What I made this week:

Lemon basil pesto...shown here in perfectly portioned freezer bags.
Basil from my backyard!

More of my fave garlic lemon grilled (locally grown) green beans.

Plus bruschetta and more grilling of amazing local veggies.

What I read this week:

Save Me by Lisa Scottoline

In MS reading, I enjoyed If I'd Never Met You by Cat Stappas.

My MS Symptoms Top 10 Countdown - #5 Pruritis

In my last post about paresthesias, I mentioned itching as one of these strange/abnormal sensations MS has bestowed upon me. I also said that this itching was the worst symptom of all the symptoms I've experienced. You probably think I was being hyperbolic. After all, itching  may be annoying but can it really be that bad? You've already heard that I've peed my pants and have been unable to walk without assistance. You haven't yet heard me talk about four other awful symptoms. And itching is the worst?! Yes.

(There is another symptom that I'm saving for last in this countdown because it also qualifies as THE WORST, even though I know I can't say two very different things are both equally the worst. Except yes I can because this is my blog and I can do whatever I want. Itching is THE WORST in terms of the actual experience of the symptom when it's happening and the other symptom is THE WORST primarily because of its unending duration.)

So when I say I've experienced itching from MS, what exactly do I mean? This is one of the symptoms that is so very hard to describe to someone who has not experienced it. You know the feeling when you have a bug bite or a rash or something like that? Itchy, but you maybe get at least a temporary hit of relief when you scratch or apply an anti-itch cream, yes? This is not like that. How it's different:

• My MS itching - or pruritis, to use another science-y word - always covers a much larger surface area than a bug bite. Typically it's been the majority of a limb. Most of an arm or leg. Once, it's even occurred on most of an arm and most of a leg at the same time. That's a lot of surface area.
• It's about 1,000 times as intense as a bug bite itch. You can literally think of nothing else.
• Scratching doesn't even give a temporary hit of relief. Nada. Not that that stops me from trying. The itch has nothing whatsoever to do with the surface of my skin, like it does with a bite or a rash or sunburn or being tickled.
• It generally lasts for 30 minutes to an hour or sometimes even longer, at that same level of crazy high intensity.

This experience literally makes me feel like I am losing my mind. When it happens, I always get to a point where I feel like I truly cannot stand it for one more minute. I'm at the edge of a line where I feel like I need to go to the E.R. and ask them to knock me out or something. And I think I've mentioned once or twice on here how I feel about going to the doctor at all, right? So for me to even have that thought means this had to have been insanely bad.

How often have I experienced this? Probably at least 50 times. It happened a lot during my first year and has happened all too often in the years since. It was often the first warning sign of a big, bad relapse coming at me. The itch of doom came, and 24 hours later my legs had trouble with the walking thing. In recent years, though, it has sometimes happened (as recently as 10 days ago) on its own and not necessarily as part of a big relapse.

This was another symptom early on that I had all kinds of funny rationalizing about. It first came in my right hand and forearm, and it seemed to often happen while I was playing my horn (a brass instrument where you stick your right hand into the bell) so I was convinced I had suddenly developed a metal allergy. Naturally, I did a lot of research and talked to other horn players who I knew had this kind of allergy. The fact that their experience of it sounded nothing like mine did not deter from being convinced that this was what was going on.

How do I act when this is going on? I kind of lose my mind. I do scratch, maniacally, even though it is not helping and I know it won't. In the early days, I would turn the faucet on way too hot and hold my arm under it. Knowing the effects of heat on my MS, I now know how very dumb this one was, and I don't do it anymore. Weirdly, though, it kind of worked in that it tore my mind away temporarily at least from its frantic scream about the itch. Distraction works, but only in this kind of extreme way and not so much in a watch-this-cute-puppy-video way. [Sudden lightbulb idea - next time, I should try ice packs!] Now, I sometimes violently whack my arm against furniture even though I know this is probably not helpful. I lay on top of it with all of my weight. This last one seems to be one of the more helpful coping methods, probably because, like with the hot water, it distracts and confuses my brain. It only really works when the itch is in my arm, though, not so much when the itch is in my leg. Mostly, though, I just wait not at all patiently for it to pass. This usually occurs within an hour, but I've had a few 2-hour doozies. 

via GIPHY

I just asked my mom what I'm like when this is going on, as she has seen it many times now. She says that I get a particular look on my face, that it drives me crazy, and it's clearly all I can think about it. That last part is so dead on. There is literally nothing else I can think about when this is happening. The few times where it has happened in public or around people other than those I know I can go "crazy" around, it's been a war inside myself to keep it together until I can break away.

So yes, itching is THE WORST of my MS symptoms. I would not wish it on my worst enemy.

This Week in My Life: Week 36 of 2016

Hey, did y'all catch my symptoms post on paresthesias yesterday? Only 5 posts more to go in this 10 "greatest" hits series.

This post will be pretty short, because it's been a tired, recovery week from the past few weeks, and because I took very few pictures.

The view from here:

 Smoke Gets in Your Eyes  [cc: Traci :-)]

Tysabri time!

the guy getting chemo next to me was listening to a political-type radio show
that was making me ANGRY, so I distracted myself by doing this.

CLOUDS ARE THE BEST

My MS Symptoms Top 10 Countdown - #6 All the Paresthesias

If you're not a person with some MS experience and/or you're not a medical professional, you might not know what the term paresthesias even means. I didn't either, but I now know all about them! So sit back, relax, and let me teach all about paresthesias, from the lens of my personal experience.

What is a paresthesia?

Put simply, it's a weird feeling. An abnormal sensation. The most common paresthesias are numbness and a "pins and needles" tingling kind of feeling.


The paresthesias I've experienced:

pic from Des Burns on flickr

• Numbness. I'm mentioned in passing in previous symptom posts that my first real symptom was numbness. My right foot and pretty much my entire right leg were numb for months. Sometimes it was just a little numb, sometimes it was insanely numb. Think sitting in an ice bath or getting all kinds of novocaine and you'll kind of get the picture. This has returned a handful of times over the years, though it was present more often than not during my first year with MS. Even though it was summer, I wasn't shaving my legs much at the time because shaving a totally numb body part is weird and hard and potentially dangerous. When I finally gave in and went to the doctor, I knew they were going to be examining my legs, so naturally, I had to shave. Ha! I probably shouldn't have, but luckily I didn't severely cut myself. I've experienced numbness in both feet, both legs, both hands, one arm, and over most of my face. Numbness is sometimes just annoying, and it is sometimes debilitating and makes using your body a challenge. 
• Tingling. This came and went along with the numbness. And it has continued to come and go throughout this last decade.

  

  pic from Ias - Initially on flickr

  Sometimes it's a huge area that is tingling. Sometimes, it's one tiny little area. Like the tip of my nose. In certain parts of my body, it feels less like a my-foot-fell-asleep-pins-and-needles feeling and more like a part of my body is like a cell phone set to vibrate and it's ringing. You know how it feels when a cell phone vibrates and it's touching  part of your body? It's kind of like that but often isolated to weird little (like one square centimeter) spots. It can also cover a large area all at once. Tingling is mostly just annoying but at an insanely high level of annoyance. When the tip of your nose is "buzzing" a couple of times a minute off and on all day long (but more on than off), it's pretty impossible to concentrate on anything else at all. For me, the tingling sensation has run the gamut from pins-and-needles to burning to the buzzing vibration sensation, and it's happened in places all over my body.
• Temperature Confusion. There's probably an official science-y word for this, but I don't know what it is. This is when hot feels like cold and/or cold feels like hot. This was happening early on when the leg was super numb. Showering was confusing because part of my body knew the temp was normal (warm-hot), but part of my body was angrily convinced it was actually freezing cold. But at the time, I wasn't even really cognitively aware of this. I just knew something felt weird and wrong and off. At the first neurologist appointment (after the first horrible GP appointments), the doctor put a metal tool of some kind under hot water from the tap for a while and then pressed it against my hand where I confirmed that it was indeed hot. Then he pressed it on my leg or foot, and suddenly it was ice cold! It suddenly all made sense, and that's when I learned this was actually a symptom and a real thing. In a sort of related (but not really) way, sometimes numbness feels like coldness and tingling/burning feels like heat. All of these symptoms can be hard to put into words that really describe what they feel like.
• Lhermitte’s Sign. I don't know if this really belongs in the paresthesia category, but I'm putting it here. This is often described as a kind of nerve pain, but in no way have I ever found it to be painful. In fact, I often enjoy the sensation. This is when you lower your chin down towards your chest and you feel an electric shock-like sensation running all the way down your spine. It's usually described as an electric shock, but for me, it's more of a buzz similar to that cell phone vibration I mentioned above as a kind of tingle. For me, it is not at all painful. This is something that really weirded me out early on, though. I kept feeling this weird buzz, and I kept searching for my phone since I assumed that's what I was feeling, but it was never there. I hadn't put two and two together to realize that it happened whenever I moved my head in a certain way (bending it down/forward even slightly), but again in that first appointment, the doctor told me to bring my chin down towards my chest and aha lightbulb moment! Lhermitte's has visited me during pretty much every relapse, but also always pops up when I am particularly tired or exhausted or worn out. It's kind of an early warning system that I need to get more sleep or take it easy.
• Itching. Itching? Yes, itching! Want to know more? Well, this is one is such a huge one for me (ABSOLUTE WORST SYMPTOM OF ALL THE HORRIBLE SYMPTOMS I AM NOT KIDDING) so it's getting its own spot in the countdown because I can't limit my feelings about this one to one hearty paragraph on this list.